This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.
SOFT (Support Organization For Trisomy)
National. 50 chapters. Founded 1979. Support and education for families of children with trisomy 18, trisomy 13 and related genetic disorders (including trisomy 9). Education for professionals. Quarterly newsletter, pen pal program, phone network, regional gatherings, annual international conference and booklets. Online information on finding a local support group. Dues $25. Write: S.O.F.T. c/o Barbara Van Herreweghe 2982 So. Union St. Rochester, NY 14624 Voice: Call Barbara Van Herreweghe 585-594-4621 or 1-800-716-7638 (for families) Fax: 585-594-1957 Website: http://www.trisomy.org E-mail: barbsoft@rochester.rr.com Verified: 9/21/2011
Trisomy 18 Foundation
Online. Support for parents and families of a child diagnosed with Trisomy 18. Message board and chatroom. Website: http://www.trisomy18support.org Verified: 6/28/2011
The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp
If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org
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